Bitterness of life’s direction but realizes part of my life purpose is to help David have a happy and fulfilled life.

It’s now 2018. 16 months from David’s passing into eternal bliss with his Savior.

I remember writing the reminder above for a future blog post. I was struggling with bitterness toward God, really, for the first time. Although I had had some sadness with how life had “turned out” (aka God’s providence), I was never actually bitter toward the Lord. But as David’s Dystonia worsened and living, for him, was so difficult, the caregiver situation crumbling, bitterness started to creep in.

I’d had goals and dreams over the years but those started to disintegrate as David’s condition accelerated.

Through my daily talks with God, devotions, Bible reading, meditations and crying out to the Lord for help I gradually saw my goals in life changing into One Main Goal. To make David’s life happy.

That was all that mattered. My goal was to make David as comfortable as possible. Our days were filled with experimenting with every kind of cushion, padding and wheelchair implementation we could think of to keep David from cutting, bruising and scratching himself when he jerked and contorted from his Dystonia. We also experimented with various head rest situations to keep his head from either flopping back, causing him to choke or flopping forward. We put soft towels behind his head to absorb his perspiration caused by a strange condition we never really figured out.

What would it be like if you had no control over anything at all. If you were totally dependent on others for everything. I can scratch an itch, change my position if I’m uncomfortable, get a sip of water if I’m thirsty, take myself to the bathroom when I need to, put on a jacket or take it off as I’m cold or hot, turn down the music if it’s too loud, etc. There are so many things we can avoid or do for ourselves throughout the day that we don’t even think of but that someone in a similar condition to David can’t do. If someone has body odor or too much perfume I can walk away. David couldn’t. I remember one time a caregiver had spayed a ton of strong air freshener in the bathroom and then took David in. I walked in and couldn’t hardly breathe! I was “fuming”!

My motto became, “How would I want to be treated? What if it was me and not David?” I tried to instill this thought to David’s caregivers too. Basically the Golden Rule. How would you feel if it was you in that wheelchair?

I did as many silly and goofy things in front of him that I could think of to make him smile or laugh. I would dance to his silly shows and sing dramatically. We tried to keep him engaged. He would zone out and be in his own world the closer he was to the end of his life. (of course no one knew he was near the end of his life)

One of David’s most favorite things to do was to go to a movie with his friends. He lived for those times! The last movie he was able to get out to see when I could still get him in and out of the car myself and when he could still sit in his chair without a head rest was Jungle Book. We went with Margaret and her Dad. Although he wasn’t fully engaged during the entire movie, he was happy and I saw glimpses of the old David. I’ll never forget that.

“The joys of heaven will surely compensate for the sorrows of earth.” Morning and Evening by Spurgeon

I’ve recently thought if changing the title of my blog to that -raw diary of a special needs parent. But then how would that actually be encouraging and inspirational?

I don’t want to drag others down with me but at the same time, seeing that someone else is going through a rough time, I know, can actually be encouraging In a weird way.

Even as I write this, I’m hearing David moan and sometimes yell out in the other room as he is laying in his hospital bed before the caregiver gets here. I’ve lost count of how many times I’ve gone in there this morning to roll him over, reposition him, wipe his forehead and give him medicine.

Sometimes life events don’t come in neat little inspirational packages. Instead, it’s the raw pain of the moment, when written down and reflected upon later that we gain a bit of inspiration and encouragement.

It’s a little hard to concentrate right now with David yelling in the other room so I’ll just go ahead and in these thoughts right here , in the raw.

How To Respond To Those Suffering

I recently responded on my Facebook wall about a post that was written by Elizabeth Gilbert on her page. Her post was titled, “I Don’t Know.” You can read her original post here.

In a world of tragedy and so much uncertainty, this post really hits home and is a great encouragement. Whether it’s all the terrible things happening in the world, a terminally sick loved one, a broken marriage, a stillbirth late term, an emotionally disturbed child, an “impossible” relationship, a severely handicapped child, the list is endless, we can all relate at some point.

And I do agree with the writer that there are many heartless and thoughtless words and cliches thrown at people who are at the depths of their suffering.

But why is that? Maybe they’ve never truly suffered. Or maybe they are trying their best and want so badly to encourage and sympathize and that’s all they know to say or do. They may not realize yet that just a hug and “I’m sorry” or “I don’t know” could actually be the best thing.

But what about the one suffering? I know it sounds flippant and uncaring to just say, “receive it with grace because they just don’t understand”. I’ve experienced a plentiful share of suffering so far in my life. Those who know me know that I’m in the midst of some pretty heavy things. But I know that it will eat you up if you dwell on any heartless sentiments that others say to you in your deepest sorrow.

To the sufferer, I agree that part of healing is reaching out to help even one person. Reach out with love to help one person going through a terrible time.

But go further and higher. From one fellow “sufferer” to another, let me offer a few medical procedures that I know will help:
1. See the right doctor – Cry out “Please God Help Me!!”
2. Get an eye examine – Your vision may be off. Focus on the One who can really make a difference and do something about it instead of focusing on yourself and the painful situation. The more I focus on God’s character instead of my difficult and sorrowful situation, the less hopeless I feel and my grief, although still there, is easier to handle when I’m not all alone and handling it by myself.
3. You might need Heart Surgery – You could need more serious surgery. The healing power of saving Blood is where the real healing comes. “because, if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved. For with the heart one believes and is justified, and with the mouth one confesses and is saved.” (Romans 10:9&10)

I honestly don’t know how people get through some of the difficult and sorrowful things in life without knowing the Comforter.

The little book, The Red Sea Rules – The same god who led you in will lead you out by Robert J. Morgan, has been a huge help and source of encouragement to me. I highly recommend it to everyone. Because none of us are immune to difficult times. At some point in life we will all suffer deep sorrow and pain.

Here is a quote from the book that has given me much encouragement:

“When before the throne we stand in Him complete, all the riddles that puzzle us here will fall into place and we shall know in fulfillment what we now believe in faith– that all things work together for good in His eternal purpose. No longer will we cry “My God, why?” Instead, “alas” will become “Alleluia,” all question marks will be straightened into exclamation points, sorrow will change to singing, and pain will be lost in praise.”

I like to see the big picture before I start a project or a journey. If I don’t look at the big picture first then I feel like I’m starting blindly and am very unsure where I’m going and what I should actually be doing.

But when it comes to faith and living a life that pleases God, we don’t always get to see the big picture.

Sometimes I get anxious when I think about the future with and for David. I think about all his many needs. Will we be able to care for him in our home for the rest of our lives? How long can we keep up this daily routine physically and emotionally? Sure, we have help. I’m thankful for the 40 hours a week of caregivers. (but even having people constantly in our home is stressful)

And what about the things that will make his life better? A touch screen computer, a handicap van, a better wheelchair, a device for communication, camps, day programs, caregivers who really care and can handle him, and on and on and on! What about the time, the money, the research? I get overwhelmed at times!

When God led the Israelites out of Egypt, across the Red Sea, and through the desert He didn’t lay out a map for them. He didn’t give them the big picture.

But He did lead them and guide them every step of the way. He protected them and He guided them. (“By day the Lord went ahead of them in a pillar of cloud to guide them on their way and by night in a pillar of fire to give them light, so that they could travel by day or night.” Exodus 13:21)

The Lord led them moment by moment, step by step. It was their place to trust and walk in the light that He gave them, by faith.

“We mustn’t doubt in the darkness what God has showed us in the light.”

We mustn’t collapse when faced with adversity. Following God’s will isn’t a matter of unveiling, but unfolding. The One who knows the faraway future reveals each close-at-hand-step as needed.

“To go as I am led, to go when I am led, to go where I am led”; A. T. Pierson once wrote, “it is that which has been for twenty years the one prayer of my life.”

Take things moment by moment, and when you don’t know what to do, just do what comes next. Trust God to lead you a step at a time.” The Red Sea Rules by Robert J. Morgan

May this be an encouragement to you to live trusting in Him moment by moment no matter what is going on in life. This is living in a way the pleases Him in all things.

I receive email notifications from a few blogs. One of them is from a father of a special needs child. I don’t read all the emails or the posts but there was something about this one particular post that caught my eye.

Whenever I hear a preacher referencing our glorified bodies I usually tear up as I think about our son David who is in a wheelchair due to his Dystonia. He has also lost his ability to speak and pretty much do anything.

So, imagining David with his glorified body running and praising God is just too wonderful to take in. That is why this particular post I read from the special needs father really struck a chord. He quoted part of a poem by John Piper called Glorified.

For our purposes though I’m only going to include a portion of the poem. Click on the link above to read the whole poem.

I know this will bless you!

And as I knelt beside the brook
To drink eternal life, I took
A glance across the golden grass,
And saw my dog, old Blackie, fast
As she could come. She leaped the stream-
Almost-and what a happy gleam
Was in her eye.
I knelt to drink,
And knew that I was on the brink
Of endless joy.

And everywhere
I turned I saw a wonder there.
A big man running on the lawn:
That’s old John Younge with both legs on.
And there’s old Beryl, and Arnold too,
Still holding hands beneath the blue
And crystal sky: No stoop, they stand
Erect. No tremor in their hand.
The blind can see a bird on wing,The dumb can lift his voice and sing.
The diabetic eats at will,
The coronary runs uphill.The lame can walk, the deaf can hear,
The cancer-ridden bone is clear.
Arthritic joints are lithe and free,
And every pain has ceased to be.
And every sorrow deep within,
And every trace of lingering sin
Is gone. And all that’s left is joy,
And endless ages to employ
The mind and heart to understand
And love the sovereign Lord who planned
That it should take eternity
To lavish all his grace on me.

Glorified by John Piper, December 22, 1985

The day of the Lord will be a glorious day! No more sickness and no more sin. For those who love Him it will truly be a glorious day!

A friend tagged me on Facebook with this poem. At first I didn’t want to bother reading it because so many of these types of things are written with a bitter attitude and an attitude of “the world owes me”.

But I was pleasantly surprised at the grace and kindness of this poem. I think you will enjoy it!

I AM THE DISABLED CHILD

I AM THE CHILD WHO CANNOT TALK. You often pity me. I see it in your eyes. You wonder how much I am aware of…I see that as well. I am aware of much…whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty to me. I marvel at your frustration, knowing mine to be far greater- for I cannot express myself nor my needs as you do. You cannot conceive my isolation- so complete it is at times. I do not gift you with clever conversation or cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, share my needs, or comments about the world around me. I do not give you rewards as defined by the WORLD’S standards…great strides in development that you can credit yourself. I do not give you understanding as you know it.

What I give you is so much more valuable… I give you instead opportunities: Opportunities to discover the depth of your character- not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you will ever go on your own, working harder, seeking answers to your many questions- creating questions with no answers. I AM THE CHILD WHO CANNOT TALK.

I AM THE CHILD WHO CANNOT WALK. The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair- to run and play like other children. There is much you take for granted. I want the toys on the top shelf. I need to go to the bathroom…oh…I’ve dropped my spoon again! I am dependent on you in these ways. MY gift to you is to make you aware of your great fortune: your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me- I always notice them. I feel not so much envy as desire; to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I AM THE CHILD WHO CANNOT WALK.

I AM THE CHILD WHO IS MENTALLY IMPAIRED. I don’t learn easily if you judge me by the WORLD’S measuring stick. What I do know is infinite joy in the simple things. I am not burdened as you are with the strifes and conflicts or a more complicated life. MY gift to you is to grant you the freedom to enjoy things as a child: to teach you how much it means to have your arms around me- to give you love. I give you the gift of simplicity. I AM THE CHILD WHO IS MENTALLY IMPAIRED.

I AM THE DISABLED CHILD. I am your teacher. If you allow me- I will teach you what is really important in life. I will give you and teach you unconditional love. I give you my innocent trust- my dependency upon you. I teach you respect for others and their uniqueness. I teach you about the sanctity of life. I teach you about how very precious life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all, I teach you Hope and Faith.

How do you find a good caregiver?

Two years ago our son qualified for 30 hours of caregiving help. We were thrilled! Finally, after many months of dead ends, we were going to be getting!

Now the question, “How to find a GOOD caregiver?”

Thankfully, the first person who showed up at our door was a perfect fit for David. We still have her in the afternoons and she has been a huge blessing.

We also had a fantastic morning caregiver. She, too, was perfect for David but in different ways. Our morning caregiver was like a big sister to David. She was strong, cheerful and could play his hand help game with him. That was an added plus since his Dystonia had gotten to the point where it was too difficult for him to play himself.

Sadly, we lost Candace, our morning caregiver. She left our caregiving company for a full time position.

So now we find ourselves in the position again of finding another morning caregiver. This time, it hasn’t been so easy.

But now, after two years we know a few more things.

We know better what to look for in a good caregiver. We have our list.

I’m going to share my list with you in hopes that it could help you or someone you know who is looking for a good caregiver.

Of course, my list won’t be exactly like your list since David’s needs aren’t the same as your loved one but it will be a place to start and will at least help you get your wheels turning.

1. We need someone strong. Although our caregivers from the company we are using aren’t supposed to “lift” David, they do need to “transfer” him. He is 6 ft tall and cannot walk or stand on his own so we need someone strong.

2. Someone who isn’t “large” (to put it nicely). That just won’t be able to maneuver David in the bathroom since it is not a wide space. Plus, they have to be able to get him downstairs on the stairlift and that isn’t easy for a large person.

3. Someone who is patient. It takes David a long time to spell out his answers on his alphabet chart.

4. Someone who is cheerful. What more can I say about this point? It’s miserable to have to be around someone who isn’t cheerful when you don’t have a choice.

5. The cherry on top was someone who can play his hand help, DS Gameboy. But after going through 5 or 6 people and even trying one out for the past 2 months, I realize that there are other things more important than someone being able to play his game with him. What would be your cherry on top?

6. Someone who is confident and can learn fairly quickly.

7. Someone who will enjoy being a companion and friend to David and not just a babysitter. He enjoys doing a word search book with someone.

8. Of course someone you can trust in your home. I almost didn’t write that one down since it should go without saying.

I hope these are helpful to you or someone you know who find themselves in the position of finding a good caregiver.

Now, get out a sheet of paper and make your own list that takes into consideration the individual needs of your loved one.

And me? I’m starting over at square one since the morning caregiver we now have isn’t working out. But I know there is someone out there who will be a perfect fit for David.

If this post help you please share it!

I’d love to hear your thoughts in the comments below!

Be blessed!

Dayna Camp

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This same God who led you in will lead you out!

Of course we know that life it not just smooth sailing or a bed of roses. With the sailing

comes high winds and storms at times and with the beautiful roses there are also thorns.

That’s what the story of the Israelites is all about!

I’ve been reading a great little book called The Red Sea Rules – 10 God Given Strategies for Difficult Times.

For the next several GraceNotes, I will probably be quoting from this wonderful little book.

In the story of the Red Sea, the Israelites followed the pillar of cloud and fire as carefully as possible, thrilled with their new freedom, full of excitement about the future. Yet as they followed Him, God deliberately led them into a cul-de-sac between hostile hills, to the edge of a sea too deep to be forded and too wide to be crossed.

(pg. 6 of The Red Sea Rules)

You know, on a side note, I’ve heard people try to explain away the miracle of the parting of the Red Sea. One “explanation” is that the water was so shallow at that particular spot that it was easy for the Israelites to cross. If it were that shallow, then it would truly be a miracle that Egyptian’s strong army drowned in the Red Sea while the Israelites, women and children included, made it safely across!

The Lord led the Israelites to this hard place. But He didn’t leave them there. Here is something to think about that should give you encouragement.

Here is a deeper secret of the Christian life:

…when you are in a difficult place, realize that the Lord either placed you there or allowed you to be there for reasons perhaps known for now only to Himself.

The same God who led you in will lead you out!

And know that He will cause all things to work together for good in your life if you love Him. (Romans 8:28 paraphrased)

You will never have this moment back.

Enjoy the Moment. You will never have it back.

It’s so easy to get wrapped up in our goals, plans and dreams and forget to live each moment.
In this short video, I was taking a walk on a very hot summer day. When I first stepped outside I had an immediate hot flash and almost went back in the house. But I decided to press on with thoughts of a trim figure at my son’s wedding next year.

As I walked along listening to upbeat music I became more and more appreciative of the beautiful day the Lord provided. Along the next block, as I walked in the shade, I soaked up the beauty of some very lovely yards that I wouldn’t have appreciated if I’d gone back in the house.

It made me think about how we often are living for the moments and events ahead of us rather than this very moment.

In the Spring it’s easy to get outside and appreciate the beauty and freshness of the Spring season.

But there is a beauty in THIS day too.

Yes have goals and dreams and work toward them.

But don’t forget to appreciate and enjoy this day too.

Each day is part of that journey. As they say, enjoy the journey, not just the destination.

Be blessed! Be inspired!

Dayna Camp

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